I was really young when I was diagnosed -- not as young as a lot of people are when they're diagnosed with RA, but it sure seemed young to me. It was 1985, I was 23 years old, a mom, and my experience was similar to what I've heard a lot of people with RA say about their first inkling that something was wrong: I woke up one day, and I simply could not get up. I physically could not move. I was living in south Texas at the time, and I spent something like six months going to all sorts of doctors.
Finally, after months of not getting a definitive diagnosis, my older daughter's pediatrician suggested that I see a rheumatologist. So I went to one, but even then I wasn't really able to get a clear-cut diagnosis. In fact, I was initially diagnosed me with SLE [systemic lupus erythematosus]. For the next several years, the doctor kind of went back and forth on whether I had SLE or rheumatoid arthritis. Eventually I was given a crossover diagnosis of the two. [http://www.lupus.org/resources/15-questions-lupus-and-overlap-disease-syndromes] And you know what? I remember that I wept in the doctor's office when I heard that, and he tried to comfort me, telling me, "We'll get through this." He obviously thought I was devastated by the news. But I was crying with relief! I finally knew what I was up against.
Two of my three sisters and my one brother all have rheumatoid arthritis so I'd say that it runs pretty deep in our family. We're spread all around -- Los Angeles, the Chicago area -- and I suppose we do make up something of a support group for each other. That's been really nice, in a way, but when you think about it, it's also quite scary. I have children, of course, and six grandkids, and it's really hard not to wonder, with that much of the condition in my immediate family, what the chances might be that my kids will have an issue with it at some point down the road.
My sisters and my brother don't have what I would call severe cases, so for the most part they manage with NSAIDs [nonsteroidal anti-inflammatory drugs]. But I also want to be clear that I'm not downplaying or belittling what anyone who has RA goes through on a daily basis. What some people might consider a mild case of rheumatoid arthritis is still going to be life-changing for pretty much anyone who gets that diagnosis.
I've never been a "woe is me" kind of person -- never, ever -- and honestly, I can't understand that attitude. I don't want to trivialize anyone else's condition, because I know that some of the things that I struggle with, physically, other people might think of as trivial. So I never want to judge. At the same time, I used to go to support groups, and even lead support groups, and usually someone would be complaining about something like dry eyes. And I'm like, Really? Dry eyes? At least you can see. So it was difficult for me. Some people are able to sympathize or empathize with that, but I couldn't do it. I just don't understand why people aren't happy to be alive.
Cooking is my thing. It takes me longer to get stuff ready, to get bowls out and to manage the knife and the cutting and chopping, because my biggest mobility issues are in my wrists, elbows and hands. But I do love to cook. And I can't stand dust, so we keep our house really clean, which also takes me longer than it would if I didn't have RA. My relationship to time is maybe different than other people's might be. For example, we might spend a whole day running errands and shopping, once a week, instead of that taking just a few hours.
But it's a full life, no doubt about it. We travel, and we entertain. We love to have friends over. Nowadays, I can drag anything out and make it take all day. And at 4:30, the happy hour bell rings. It used to be later, maybe 5:30 or 6, but we moved it up a bit. Maybe that's why we're eating healthier, too -- trying to offset some of those bad habits.